Development and reliability of a system to classify the eating and drinking ability of people with cerebral palsy

Sellers, Diane; Mandy, Anne; Pennington, Lindsay; Hankins, Matthew; Morris, Christopher

doi:10.1111/dmcn.12352

Cited by 220 publications

(240 citation statements)

References 30 publications

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“…12,13 Classification systems for communication, speech, and dysphagia are not in universal use, although potentially useful classifications have recently been developed. [14][15][16][17] Working towards valid and reliable classification systems and incorporating these into surveillance programmes over time is essential to allow (1) comparison with data from other programmes and (2) monitoring the severity of CP over time.…”

Section: Discussionmentioning

confidence: 99%

An international survey of cerebral palsy registers and surveillance systems

2016

Dev Med Child Neurol

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AIM-To describe cerebral palsy (CP) surveillance programmes and identify similarities and differences in governance and funding, aims and scope, definition, inclusion/exclusion criteria, ascertainment and data collection, to enhance the potential for research collaboration.METHOD-Representatives from 38 CP surveillance programmes were invited to participate in an online survey and submit their data collection forms. Descriptive statistics were used to summarize information submitted.RESULTS-Twenty-seven surveillance programmes participated (25 functioning registers, two closed owing to lack of funding). Their aims spanned five domains: resource for CP research, surveillance, aetiology/prevention, service planning, and information provision (in descending order of frequency). Published definitions guided decision making for the definition of CP and case eligibility for most programmes. Consent, case identification, and data collection methods varied widely. Ten key data items were collected by all programmes and a further seven by at least 80% of programmes. All programmes reported an interest in research collaboration.INTERPRETATION-Despite variability in methodologies, similarities exist across programmes in terms of their aims, definitions, and data collected. These findings will facilitate harmonization of data and collaborative research efforts, which are so necessary on account of the heterogeneity and relatively low prevalence of CP.Correspondence to Shona Goldsmith, Cerebral Palsy Alliance, PO Box 6427, Frenchs Forest, NSW 2086, Australia. sgoldsmith@cerebralpalsy.org.au. A list of contributors is given in Appendix S1 (online supporting information). SUPPORTING INFORMATIONAdditional supporting information may be found in the online version of this article: Appendix S1: List of contributors. The purpose of this survey was to describe CP surveillance programmes and identify similarities and differences across topics of importance for the relevance and sustainability of, and collaboration between, surveillance programmes. It is anticipated that results will (1) encourage and inform those establishing new programmes about the methods and data items collected by existing programmes; (2) inform health professionals and researchers of the existence of national and international surveillance programmes and the potential for population-based research and data linkages; and (3) assist existing surveillance programmes to investigate the potential for future collaborations. HHS Public Access METHODRepresentatives from 38 surveillance programmes were contacted by e-mail and invited to participate in the online survey. Surveillance programmes were identified by the study authors, and all participants were encouraged to forward the survey link to any other known surveillance programmes.The survey, developed and constructed by the study authors, was available online via 'Survey Monkey' (https://www.surveymonkey.com) for 4 weeks in June to July 2014. Seventy-one questions related to issues of governance and fundin...

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Section: Discussionmentioning

confidence: 99%

An international survey of cerebral palsy registers and surveillance systems

2016

Dev Med Child Neurol

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“…System ten jest komplementarny wobec innych systemów klasyfikacyjnych służących ocenie lokomocji, motoryki małej i komunikacji. Został uznany za trafne i rzetelne narzędzie diagnostyczne [23,24], które może być stosowane przez klinicystów zarówno w praktyce klinicznej, jak i badaniach naukowych oraz przez rodziców. System ma zastosowanie u dzieci od 3 roku życia.…”

Section: Metody Diagnostyczne Stosowane W Ocenie Zaburzeń Karmieniaunclassified

Eating and drinking ability classification system in cerebral palsy

Michalska¹,

Panasiuk²,

Pogorzelska³

et al. 2017

Child Neurology

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sTResZCZeNieCzynności jedzenia i picia to złożone procesy, które poza prawidłowym funkcjonowaniem motorycznym obszaru orofacjalnego wymagają również synchronizacji z oddychaniem, stabilności posturalnej, w tym kontroli głowy, oraz szeregu innych sprawności motorycznych. Zaburzenia karmienia są powszechne w mó-zgowym porażeniu dziecięcym. Istota i ciężkość zaburzeń mogą różnić się, w zależności od deficytów sensomotorycznych, zaburzeń motoryki dużej i małej, czy deficytów poznawczych. Celem pracy jest przedstawienie systemu klasyfikującego ocenę umiejętności jedzenia i picia u osób z mózgowym porażeniem dziecięcym, komplementarnego wobec istniejących systemów służących ocenie lokomocji (GMFCS), manipulacji (MACS) i komunikacji (CFCS). Słowa kluczowe: zaburzenia karmienia, systemy klasyfikacyjne, mózgowe porażenia dziecięce aBsTRaCT Eating and drinking are complex processes that, in addition to proper motor functioning of orofacial area, require synchronization with breathing, postural stability including head control and a range of other motor skills. Feeding disorder is common in cerebral palsy. The nature and severity of the problems may differ in relation to sensorimotor impairment, gross and fine motor limitations or cognitive deficits. The aim of the study is to present a classification system for assessing the ability of eating and drinking in people with cerebral palsy, complementary to the existing systems assessing gross motor function (GMFCS), manual ability (MACS) and communication function (CFCS).

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“…35 In Canada, an Autism Classification System of Functioning: Social Communication (ACSF:SC) is being developed and field tested. 36,37 How Are These Tools Used?…”

Section: Systems Recently Published or Under Developmentmentioning

confidence: 99%

Classification in Childhood Disability

et al. 2014

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Classification systems in health care are usually based on current understanding of the condition. They are often derived empirically and adopted applying sound principles of measurement science to assess whether they are reliable (consistent) and valid (true) for the purposes to which they are applied. In the past 15 years, the authors have developed and validated classification systems for specific aspects of everyday function in people with cerebral palsy--gross motor function, manual abilities, and communicative function. This article describes the approaches used to conceptualize each aspect of function, develop the tools, and assess their reliability and validity. We report on the utility of each system with respect to clinical applicability, use of these tools for research, and the uptake and impact that they have had around the world. We hope that readers will find these accounts interesting, relevant, and applicable to their daily work with children and youth with disabilities.

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Development and reliability of a system to classify the eating and drinking ability of people with cerebral palsy

Cited by 220 publications

References 30 publications

An international survey of cerebral palsy registers and surveillance systems

An international survey of cerebral palsy registers and surveillance systems

Eating and drinking ability classification system in cerebral palsy

Classification in Childhood Disability

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